A D.A.D. for Emily

My mind has been so busy this week!
Emily went through her first stomach virus this week.
In case you don't know, stomach viruses in type 1 diabetics are very bad.  You see, in order to stay healthy (ok, alive really) a T1D needs to eat.  When you have a stomach virus, and are throwing up, it is impossible to get fuel into your body.  I spent two solid days on and off the phone with the pediatrician and endocrinologist, trying to decide if things had progressed bad enough to go to the ER for an IV with glucose fluid.  Thankfully, we were able to avoid that trip.  It sure was scary though.  She was pretty sick.  We didn't sleep much because we were awake checking her blood glucose levels.  I don't know how many times we said, 'I can't wait for her D.A.D. because then we would get some sleep' 
In case you missed my last post, I said that we had decided to start the journey of getting her a D.A.D...Diabetes Alert Dog.  D.A.Ds have been used for about 9 years and are showing they can do amazing things.  D.A.Ds are able to alert you to a high glucose level, or a low one 30-40 minutes before it shows up on a meter.  They can smell when your blood is changing.  Their noses are so sensitive, that people are reporting their D.A.D. can smell their person up to a mile away.  Kids are going outside to play, safely, because their D.A.D. is inside with mom, alerting her of any blood sugar issues.  Emily is unable to feel her lows, or her highs for that matter.  Type 1 Diabetics can have plummeting blood sugars, very quickly, which is very dangerous.  Too low of a blood sugar can result in seizures, coma, and even death.  Too high of sugars result in eye issues, hearing loss, heart problems, kidney problems, neuropathy, amputations..the list goes on and on.
Another, very real, and very scary issue is a relatively new syndrome called dead in bed syndrome.  For some reason, kids are having a harder time feeling their lows in the night, and more and more kids are dying in the night because of low levels.  Scientists are unsure why this is happening more often than it used to.  Parents didn't ever used to check their children's sugar levels at night, but now they are recommending checks at midnight and 3 am.  We know there is great value to this, as we have had to wake Emily up at midnight or 3 for juice because her levels are way too low.
As a family, we prayed and decided we wanted to give Emily the best chance at a long, healthy life.  We'd love to avoid as many hospital stays as possible.  We'd love to never see her in DKA.  We'd love to never, ever have to lose her to dead in bed syndrome.
These dogs are expensive.  But how do you put a price on the life of a child?  You don't.
So where do we stand?  We are on the waiting list, and should get Emily's D.A.D in January.  We have put $1k down and have raised a small amount more, just by spreading the word.  These dogs run $20k...so we have a long way to go, but I have faith that we will raise the money.
We are working through a non profit, which makes things easier, because every donation made is tax deductible, and they are able to take stock transfers.  We are going through Guardian Angel Service Dogs, Inc...this is the only group who is approved by the Juvenile Diabetes Research Foundation, and their track record is impeccable.  We could have gone with someone less qualified and paid a bit less, but not when my daughter's life is at risk.
This is where you come in.  Would you consider making that tax deductible donation?   Would you share our facebook page to help spread awareness?  It can be found at www.facebook.com/emilysguardianangel Most importantly, would you please pray for us and our endeavors? 
To make a donation, you can visit www.guardianangelservicedogs.org and pay by credit card.  After you make your payment, you will receive an email asking whose fund to credit, you would let them know Emily Williams.  This is a personal email that is not automatically generated, so may take some time, but it will come!  You can also pay by check, sent directly to the non profit, made out to GASD, with Emily Williams in the memo.  You can mail them to Diabetic Alert Dogs by Warren Retrievers, P.O. Box 910, Orange, VA 22960
Thank you so much for your help.

Isn't she beautiful?
Orange, VA 22960

Big, Long, Medical update

I can't believe I haven't posted since sweet, sweet Griffin was born.
OK, yes I can.  My computer battery doesn't charge anymore, so I'm rarely on my computer, because I hate being tethered to the wall.
That and life has just been, well, crazy.
I wanted to hop on though, and just give a general, medical update.
Firstly, Griffin is great.  They echoed him when he was first born, and he had two small issues, but he was less than 24 hours old, and most babies have these issues and they resolve themselves.  He will be echoed again at six months.  He has reflux, but is being treated for that.  He's such a wonderful little chunk!  At two months, he's 15 pounds.   I love his roly poly legs!  Everyone just loves having him here and they all want to hold him...for about two minutes, then they say he's too heavy! HAHA!!
Next, since we last spoke, Natalie and Zachary saw the cardiologist.  They both got good reports and go back in a year!  This is the first time, since Zachy was paced, that he gets to go a year in between visits.  Yay!!
Natalie is still being followed by pulmonology and is doing well.  We have been slacking with her breathing treatments, but she isn't having any issues, and we suspect soon, they will clear her from their team.  She still isn't growing.  She had gained a pound, and then at her last appointment, she had lost half that pound.  She is growing taller, just not gaining any weight.  She doesn't look unhealthy, just small.
Matthew was seen by the craniofacial team in Cincinnati on Friday.  That was a total joke.  The plastic surgeon was pretty much a jerk and said anyone who said anything more could be done for Matthew's nose, was lying to us, and there was nothing else they could do.  He left the room, and I told Matthew that was an unacceptable answer, and that I would search and find a doctor willing to help.  We did this when he was baby, doctor after doctor said they couldn't help, but we finally found one who could...I won't quit looking until we find someone again.
Dillon is normally left out of these posts, but he gets to be in this one!  A few days ago, he managed to run into an empty 10 gallon aquarium with a bare foot.  He sliced his toe up and cut his foot all up.  He ended up with 9 stitches in hiss big toe, steri strips on cuts on the bottom of his foot, and glue on a cut on the top of his foot.  He is doing well, though.
I have nothing medical to say about Collin this time!  He's doing great!
Lastly, Emily.  When I last talked about her diabetes, I was really struggling with it, emotionally.  I'm past that.  I realized that I am no longer angry when someone talks to me about it. I guess it's acceptance.  Acceptance that this is forever.  The highs.  The lows.  Nothing we can do except correct them and move on. She goes for her first 3 month appointment in a week.  That should be interesting.  The exciting news about Emily, is that we have decided to pursue the journey of a diabetes alert dog (DAD) for her.  She can't feel her lows, there have been too many times when she can't stand up because she is so low, but she says she feels fine.  She may be able to feel them, but she is too young to express to us what she is feeling.  We are so incredibly excited about this, and all that it will mean for her.  She won't be restricted due to her diabetes.  I will have extra eyes.  We are so crazy busy in our life that I can't always have my eyes on her, but her DAD will, and he/she will tell me if something is going on with her sugar that I need to know about.  These dogs are very expensive, so we will be fundraising like crazy, but it will so worth it.  I'll be keeping everyone updated on our fundraising progress!
Ok, that's it!  Hopefully, next update won't all be medical!
Oh, and happy mother's day to all the moms out there!
* I wanted to add pictures, but blogger has changed, and it looks like a pain right now, and my kids are sitting here wanting me to open my mother's day present!  Pictures next time!

And Then There Were Seven

Griffin Tennessee

9 lb 7 oz  20 1/4 in 

February 29, 2012, 11:01 PM

Griffin: Man of strong faith

On Wednesday (leap day!!) I had a routine doctor's appointment. 
I had said on Facebook how great I thought a leap day baby would be, but that I wasn't holding my breath!
At 3, I went to the doctor.  When she checked me she asked if I was having contractions, because I was dilated to 4 cm.  I told her I was having them, but I always have them, so it wasn't surprising.  She wanted me to go on the monitors to see if I was indeed contracting regularly.  I was 38 weeks, 4 days, and while she couldn't induce me at that point, if I was in labor, she could help speed things up.
Once on the monitors, it was discovered that I was indeed contracting every 4 minutes. 
She then presented me with two options: head to the hospital and have baby, or go home and wait things out. 
Here's where things got tricky.
After Emily was diagnosed with T1D, we knew things would be different in regards to what happened with the kids when I had the baby.  No longer could we just leave them all at home under the care of the older boys.  Thankfully, a dear friend of mine is a school nurse.  School nurses deal with T1Ds everyday.  We had decided that if for some reason, I went before my mom was able to get here, Molly would watch the kids.  However, the week before, Molly told me her hubby wanted her to go to New Orleans with him while he was on business.  She said she didn't want to leave me without someone, but I assured her the chances of me going into labor were slim to none, and I didn't want her missing time with her hubby on account of me!
I texted Molly and asked if she was still in town, she was! 
We decided it was go time.  I headed to the hospital, and Matt waited at home until Molly could get there.
I arrived at the hospital at about 5:30.  I kept joking about how we were in a hurry, because I wanted a leap day baby, all the while knowing that probably wouldn't happen.
After getting me admitted, they started IVs and gave me some pit to get the contractions going a bit faster.  After a little bit, the doctor on call came in and broke my water.  No turning back now!  But I was so focused on my leap day baby, I didn't care! 
Shortly after that, they asked me if I wanted an epidural.  I'm so wishy washy when it comes to epidurals.  I've given birth both ways, and honestly, I don't know why I sometimes choose no epidural, other than it scares me to death.  After talking with the anesthesiologist, I decided I would go ahead and get one. 
It was rough.  It took her 3 times to place it in the right place.  During which time I was shaking and crying and contracting.  I was wondering what in the world I was doing, but figured I'd gone through most of it, I wasn't stopping now!  Finally, it was in and I started to feel great. I could move me legs, but couldn't feel the contractions.  I kept having to look at the monitor to see if they'd stopped.  No, they didn't.
At one point the nurse came in and said the baby did something funny, and she wanted to check me.  The chart looked funny, but I really don't know what it was.  I was 5 cm.  This was at about 10.  I told Matt we weren't going to make leap day.
After a very short time, I started to feel nauseous.  Then cold.  I had a feeling I was in transition, but didn't want to say anything since the nurse had just been in to check!  After about half an hour, I was shaking pretty good and was feeling pressure.  We called the nurse, who was shocked to find me 9 cm.  She called out to the desk to have them call my doctor.  She asked if I wanted to lay on my side to wait, or if I wanted to get my legs in stirrups so I was ready when the doc got there.  I asked how long it would take the doctor, and the nurse told me about 15 minutes.  I said that I would lay on my side, because that was too long to wait in stirrups. 
However, with the next contraction, I had lots of pressure, and told the nurse I didn't think the doctor would make it.  She had me roll over and looked, and his head was coming down.  She called for more nurses and the in house doctor.  He came in, just as the next contraction was hitting.  I had the urge to bear down, and did, ever so slightly.  His head came out, followed by the rest in short order.
We had made leap day, with 59 minutes to spare!
My doctor came strolling in, shortly after he was born. 
Griffin Tennessee came into the world weighing 9 lb 7 oz.  He is 20 1/4 inches long.  He is also the picture of health.
This hospital has been amazing about staying on top of things and making sure he is, indeed, healthy.  They did an echo-cardiogram of his heart, which found his heart to be healthy. 
Unbeknownst to me, Molly was scheduled to leave, the very next day.  Choosing to have him on Wednesday was the very best thing we could have done.  I'm not sure I would have held out for another week when my mom could be there.
I look and see how God has all the details of our lives, in His hands, and it amazes me.
Everything went perfectly.  He is perfect.  I feel great. It was time for some good in our lives, and everything has been far better than good!  The kids are all over the moon happy to have him, and so are we.  God is good.  All the time.

How am I doing? Not great

I've been wanting to write this entry, but have been hesitating. 
I'm afraid it will make me look weak, and well, I feel weak enough on my own, I don't really need the confirmation from others.
However, when I changed the name of my blog, I promised to keep things real.  I promised to let that weakness show through. 
So, here we go. 
This is one of the hardest things I've ever had to do.  This whole diabetes thing, I mean.
It is so so hard.
The thing is, I know that no one understands that.  Unless you've been where we are, you have no clue.  People think diabetes can be controlled with diet and exercise.  And while that's true in type 2 diabetes, it is not true in type 1.  I know I said it in my last post, but no amount of exercise...no perfect diet...nothing we do will make her not dependent on insulin.  Her body doesn't make it. 
Her body has decided that it would be fun to destroy her pancreas.  I'm having such a hard time with this.  I don't understand it.
CHD makes more sense to me than this.  I mean, the fact that a heart ever forms normally is the thing I don't understand.  It's so involved.  It makes sense that it doesn't form perfectly every single time.
But this....I don't understand this.  How does it happen that one day your body just up and decides to start attacking itself??  I don't understand!
And the fact that I don't understand is making it so hard for me to cope with this.  Maybe cope is the wrong word.  I mean, we get through, we do what we have to do.  We check blood glucose levels all through the day and night.  We inject our daughter with insulin at least 4-5 times a day.  We count carbs.  We watch her behavior, trying to determine if her glucose is going too high or too low. 
We do these things, we get through, day by day.  What I'm talking about it coping emotionally.
I am having an incredibly hard time dealing with the fact that this isn't going away.  Ever.  Sure, there's talk of finding a cure, but who knows when that will be.  Right now we know it's not going anywhere.  This will be my sweet, sweet child's reality, forever. 
How does one accept that?  How does one deal with that knowledge?  Other than just doing what we do?
But yeah, it is so hard.
Days like today, I just want to curl up in bed and never leave.  Try to wake up from this nightmare.
After dealing with a day of low sugars all day yesterday, she woke up wanting daddy.  Well, daddy wasn't here.  She had a huge meltdown, didn't want me to check her sugar, didn't want to eat, just wanted daddy.  Finally, I was able to convince her that she would feel better if she ate.  And she did. 
I go crazy trying to figure out why her BG (blood glucose) levels do what they do.  For no rhyme or reason they will shoot too high, or drop really low.  I don't understand any of it.  Honestly, I'm a pretty smart cookie, but this disease has me so confused.  I hate the feeling. I  need to understand these different things.  And yet, I have a dear friend whose daughter has type 1 as well, who has been holding my hand through this, and who keeps telling me that there really is no reason for anything this disease does.  She says the sooner I accept that, the sooner I will stop going nuts.  It's in my nature to want an explanation though! 
So yeah, I'm having a hard time dealing with this.  I know, in time, it will get better.  Right now, it sucks.  Right now, I can't even say the words, "Emily has diabetes" out loud without breaking down. 
I guess if all this makes me weak, then it is what it is.  I feel completely weak and broken right now.
I just wish my girl would get better, and I know she won't.  That's the most helpless feeling in all the world.

Update on Emily

Since I last wrote, I am happy to report that we are home.  Emily is doing much better.  We are working on getting all her sugar levels regulated.  Who knew that this was so much trial and error??
Who knows much about Type 1 Diabetes?  I sure didn't.  I feel like I still don't.  But I'm learning quickly!
For example, did you know that when diagnosed, 70-80% of the cells that make insulin have been destroyed?  And that within a year, the rest will be destroyed?  Her pancreas will never make insulin again!  I had no idea that T1D was an autoimmune disease!  That's a huge difference between type 1 and type 2...type 2 can be somewhat controlled with diet.  Type 1, even if you are eating the healthiest foods, you still need insulin to get the sugar to the cells.  No "perfect" diet is going to give you that insulin.  You HAVE to have injected insulin. 
It's all so crazy to me! 
And where does it come from?  They don't know!  Another one of those things that no one knows the origin of that just so happened to hit my family!  Crazy, crazy, crazy!
So, we are trucking along.  Em gets at least four injections a day, sometimes more, all depending on her glucose levels.  Today was a happy day, with only four!
She has hated the injections....who would like them?  She is getting better though.  Someone told us a trick, which is helping tremendously.  We freeze quarters, she puts them where she wants her injection, it numbs the skin a bit, and the injection doesn't hurt as bad.  She then gets the quarter.  I made a huge deal out of it and called them magic quarters.  Now she thinks they are magic, and while she still says she's scared, she doesn't cry anymore.  
I can't imagine how confused she must be.  There's no way she can understand any of this.
Earlier tonight, Natalie was laying on the ground and Emily was being her doctor.  She told Natalie that she was at the doctor because she had diabetes, and that she, herself, got diabetes when she was little.  She explained to her that she needed "shots" and gave them to her.  She also told her of the magic quarters and that all she had to do was say "brrrr".
She amazes me.  She is so brave.  She tells everyone, "I had to go to the doctor because I have diabetes."  It breaks my heart to hear her say that.  To me, it's still surreal!
My family has been through so much.  And through it all, I still know that God is good. 
I know some people think I'm crazy for thinking such a thing, especially after everything we've endured.  I know, though, that He has a plan for us.  It may not be a great plan!  It may just be a plan to help our children learn to lean on Him, no matter what.  Dillon told me last night that he knows God has big plans for our family.  I'm not so sure.  I certainly don't see us as the type to be out there telling the world our story, impacting loads of people, but if we can impact our children, it is all worth it to me. 
I'm pretty sure, the plan won't be revealed to us, this side of Heaven, and I'm ok with that also.
In closing, just a cute thing that happened in the hospital. 
There were loads of doctors coming in and out, everyone talking with Emily and us. 
Someone was asking her about her brothers and sister.  They asked who her favorite brother was.  She looked at them like they had three heads, and said, "all of them, I love them all!" 
And that's the type of girl Emily is.  She loves everyone (except by the end of the hospital stay she did say she didn't really like people she didn't know..of course not, they all poked her!).  She is so silly, and such a good big sister.  If you know her, you are blessed.  I don't know how we got lucky enough to be her parents.  She's one amazing little girl.

Communities

Did you know that this week is Congenital Heart Defect Awareness week?  Well, it is. 
I sit here and think about how I became a part of this community.  It's a great community of people, just not one I ever thought, in a million years, I'd be part of.  And yet, here we are.  We've been here for eight years.  And we've survived eight years! 
In the middle of the week that so many CHD parents are so passionate about, we find ourselves thrust, head first, with no warning, into a different community. 
One that, right now, seems just as frightening.
Another chronic illness community.
Another community I never, in a million years, thought we would join.
A couple months ago, Emily started wetting the bed.  We weren't sure why, but finally bought her some Goodnites because she was wetting the bed nightly. 
Then, she started not making it to the toilet in time.  I thought she was just being totally distracted for whatever reason.
Over the last couple weeks, it has gotten increasingly worse.  To the point of needing to go to the bathroom about every half an hour. 
Of course, the first assumption is a UTI, but she said nothing hurt.  And while she had the urgency issue, she was peeing a LOT. 
Yesterday, we hit a new low.  She was going potty all day long. 
On Monday, I had made her an appointment with the pediatrician, but they couldn't see her until Thursday.
Last night, she was up all night, needing to go to the bathroom.  Finally, around 5 am, she fell asleep and just peed in her goodnite.  By 8 am her goodnite was completely soaked through and the bed was soaked as well.
I took her to the ER, because I knew something was very wrong.  They took us right back.  The first thing they did was test her blood sugar.  She hadn't eaten since last night, and her sugar was 298. 
After running several more tests, they told us Emily has Type 1 Diabetes.
I think I'm in shock.  I know nothing about diabetes.  Nothing.   It all seems so scary right now.  I know we will learn to live with this, but today has been rough.  So many finger sticks and blood draws and IVs and insulin shots.  By the time I left tonight (Matt is staying the night with her) she was screaming bloody murder when they gave her her shots.  She is so scared, and this must all be so confusing to her.  I want to take it all away from her, but as we know, I can't.
And so I sit here, wondering what lesson God needs us to learn.  What we are missing.  Wondering when we will get it right!
And I also am wondering what the diabetes community is like.  I guess I'll find out soon enough.

Sweet Emily with her new diabetes bear, Rufus.  He has owwies on all his injection sites.

She was soo happy to see Natalie.  All day she kept saying, "I NEED to see my sister"

Apparent Hiatus

I know I've disappeared. 
It's just that I try really hard for my blog to be uplifting and encouraging to others.  I'm going through a really difficult patch right now, and honestly, have a hard time coming up with positives to write about.
That sounds so bad.  I am so blessed, beyond measure.  How dare I say I have hard time coming up with positive posts?  *sigh*
This too shall pass. 
In the mean time, Miss Nannie had her second birthday yesterday!  It was such an emotional day for me.  I don't remember her first birthday being so emotional for me, and I can only chalk it up to being pregnant. 
In pregnant news, all is trucking along without any issue.  I'm almost 31 weeks, and it seems the next 9 weeks will last an eternity.
I am such an emotional mess lately, that I'm really looking forward to not crying at everything.  Other than that, I feel pretty good.  Starting to have sleepless nights due to be uncomfortable, but during the day, I'm good.
Matt started school again this week.  He is getting his doctorate degree.  Thankfully, because he's already a practicing audiologist, he can do the program online. 
The rest of the kids are all doing well, just growing like weeds and keeping a smile on mama's face. :-)